This morning a cross-party committee which has been reviewing the government's draft Human Tissue and Embryos bill has reported their findings. Some of these findings support the scientific community - for example, relaxing the ban on hybrid embryos for research. Some are structural or political and I'm not sure are a big deal for patients, such as suggesting that the proposed merger between the HFEA, which regulates fertility treatment, and the Human Tissue Authority, which governs research and the storage and use of human bodies, organs and tissues, does not go ahead.
And then there's the one that I can see a LOT of debate about. And it's the recommendation that donor conceived children have this on their birth certificate.
As you probably know if you read any UK-based in/fertility blogs, last year the government introduced legislation that said that donation of sperm or eggs was only allowed if the donor was prepared to be contacted by any resulting children when they reached 18. That is, the end of anonymous donation. This led to an immediate shortage of sperm donors in UK clinics, which almost matched the extreme shortage of egg donors which has been there for years. The responses to this have included campaigns for donors to come forward, and, I presume although I've not seen any figures, an increase in people going abroad for treatment. My clinic, for example, has no egg donor list, but cooperates with a Spanish clinic which can organise anonymous donors.
If I understand this suggestion, and I haven't read the report itself so I could be wrong, even those who conceived via an anonymous donor in Spain would have to record this information on their child's birth certificate. That's a big change.
The debate about what to tell a child of donated gametes, and what to tell, is a really tough one. Personally, particularly having read the blogs of children and young adults in that situation, plus all the long-received wisdom about adoption and how much better children cope when they know they are adopted as part of their life story (and yes, I am well aware that donor conception is NOT like adoption in many ways), I would want to tell my child. I don't know how I'd tell them or when, given that they'd likely start asking around 2 or 3 and heaven knows how you turn donor conception into an understandable story for a 3-year-old, but I'd want to tell them. For me it would be dishonest otherwise (one of the arguments being made by one of the MPs involved is that NOT putting this information on a birth certificate is tantamount to the state lying to the child), and just setting up the family for later trauma. I don't think it's possible in this day and age that the child would not find out at some point. What happens when they do the genetics part of biology in secondary school and come home to ask mum and dad if they can smell fresias or if they can roll their tongues, or if their ear lobes are attached? What happens when they need a blood transfusion and find out their blood type? There are just too many opportunities for your child to feel you've lied to them. I don't think I'd be able to do it.
Let's be clear, I say think here. I haven't had to be there, so I don't know for sure. But I do think that's what I'd do.
But putting it on a birth certificate I imagine is a huge deal for the parents involved. Birth certificates don't come up at family occasions, as a rule, but it does remove any element of choice from this big, big decision. Is this right? Who should get to make this decision - the tell/not tell decision?